Here at the personal blogging panel – Blogging Autism: Shattering Myths, Opening Eyes, and Finding Your Tribe with Shannon Des Roches Rosa, Shark-Fu, Stimey, and Carol Greenburg. Sharon deVanport was supposed to speak, but she is in the hospital with bleeding ulcers, and Carol agreed to take her place at the last minute.
How blogging contributes to the autism community…one of the goals of this session. Compassion, advocacy, and activism. Community, positivity…nothing divisive today.
Be careful with phrasing when asking questions, because some of the panelists do not grasp subtlety.
Shark-Fu is talking now, much like me, not used to talking in front of people. She usually talks about feminism, reproductive justice, but she blogs about her brother, for whom she is a caregiver. There is a whole language pattern to dealing with Medicaid and the Office of Mental Health, etc. What it’s like to be a sibling co-guardian and what it’s like to do her work. She would like to debunk the myth that autism is a childhood disease that ends at the age 18. Her brother is 40. The media focuses mainly on autistic children.
Shannon’s son was diagnosed with autism. She founded The Thinking Person’s Guide to Autism with Jen Meyer. She would like to address the myth that autism is stereotyped as misery, a nightmare. The media focuses on the negative aspects, parents killing their children due to fear of autism. She wants people to be aware of the intense joy that her family experiences. She was very excited that her son tried a bite of cheese pizza last week. (Applause!)
Carol had a brother with autism who died a few years ago. She was diagnosed with Asperger’s at the age of 44. (Another adult Aspie! Hi, Carol. I’d love to talk to you sometime.) Talking about “misery,” discussing her “miserable” life with a Master’s degree, her own business, a happy family, and her own home. The myth she would like to speak about is assumptions about autistic people’s cognitive abilities. She gets called “the R word” once or twice a month due to her communication problems. Autism and cognitive delay do not go hand in hand. We are moving towards a point where we will understand that the two are not connected at all. The new myth is that all people on the autism spectrum have some sort of savant talent, although she doesn’t want to debunk her notion that she is a genius. (Much laughter. I like her.) There are some people on the spectrum who act out violently, but there are many who are very gentle as well.
Stimey’s son has autism, and blogging about it has changed her life completely. The community is amazing and wonderful. Practical ideas, virtual hugs, supporting other people. The myth she would like to debunk is that autism is a “life-ending” diagnosis. There is not one way to be autistic.
“If we don’t make sense to them, that’s fine, because we all make sense to each other…It’s not a tragedy, it’s not a sad story, it’s not a movie of the week. It’s my family.” -Paul Collins
Comment from the audience: Julie from Mabel’s Labels has a 10-year-old son with autism. “Am I not going to have empty nest syndrome? Does this mean I’m going to have him forever?” Every time she got pregnant, her friends asked if she was crazy because she might have “another one.” The blessings outweighed the risks for her. Her son is socialized all the time by his siblings. Annoyed when people say, “How lucky he is to have you!”
Shark-Fu responds about how she gets similar comments, but she gets on her brother’s nerves. They do have a normal relationship as siblings, and they both get on each other’s nerves. “I’m a sister, not a saint.” Autism is not a saint/martyr relationship.
Question from Julia Robert: Her son has been diagnosed with “every behavioral diagnosis out there,” including autism and oppositional defiance disorder, has had a kidney transplant, and has a vision disorder. She blogs and has been very open about his story. She got backlash when she blogged about her son’s breakdown and admittance to a psychiatric hospital, but she didn’t want to hide and tell the world that “this is not okay” to talk about even though talking about the kidney transplant was okay. She continues to blog about his mental health as well as his physical health. What about privacy as he enters adolescence? Are we expecting our kids to embrace technology and online life?
Stimey says she tries to pretend that whoever she’s blogging about is sitting behind her shoulder, especially with her kids. Make sure your blog cannot be used against your children in due process and other legal issues. Shark-Fu does not use her sister’s full name on her blog, although she does use her brother’s name. But she has attracted some “negative elements” aka trolls. She doesn’t want people to know where her brother lives, so she tries not to give out too much information. She shares her experience. Remember that what you put out there lives forever online. Shannon used to post as much information as she possibly could about Leo’s progress and programs in order to bring awareness to others, but as he gets older, she’s thinking about scaling back on the details she shares, such as his progress reports. Carol worries about this all the time, sues the school district every year for due process to get what her son needs. She uses her married name for some activities and her maiden name for others. All parents, at some point, have to make decisions for their children, regardless of disability. You don’t always get your child’s permission. She has a plan for what to say if he ever is able to tell her he doesn’t like what she’s discussed on her blog, and to encourage him to start a blog about his annoying mother. You never want your 16-year old child to read words like I wish I’d never had you.
Question from the blogger of The Joy of Autism: You have to be pretty resilient if you want to be an advocate. This kind of discussion is very important because there was a huge backlash in Canada a few years ago when 20 families had the audacity to admit they had joy in their lives even though they were touched by autism.
Shannon talks about why she started her community because there is so much vitriol and misinformation out there. One third of her writers are autistic. They are not all rainbows and sparkly unicorns, they are realistic, but they try to be positive whenever possible. No one is saying that autism doesn’t come with challenges. That is why we form communities. Carol wonders about the challenges of neurotypicality. (Hehe!) Facilitated social inclusion is part of her program, run by an autism counselor, but the counselor often has to talk more to the neurotypical kids than she does to her autistic son. Autistic people do gravitate toward rules. Her son is far more polite than this “normal” friends; he always says please and thank you, while the other kids don’t. TJ is like this, too. He’s one of the most polite kids you’ll ever meet. There are lots of challenges to being just about anybody. “I’m lucky to be autistic,” Carol says. She’s not always aware she’s being insulted. It can be a blessing.
Question from @LoveThatMax: Other moms email her, and she spends hours responding to them, but it’s hard to find the time. She feels awful for not being able to engage with everyone. What can she do?
Stimey recommends developing a stock letter or making a blog post for people who write in. Shark-Fu agrees that it can be emotionally draining to address each one, so she tries to respond by making a post that addresses the main themes in her email. There are some that are far too personal that she will respond to directly. Shannon will direct people to posts that other people have written on a subject. Carol discusses boundaries, wonders why other people feel she has an obligation to respond to everyone directly when she has her own life and job and family. There are other people and agencies that are set up for these things. She would rather point people in the proper direction so they can focus their energies on connecting with the right resources to solve their problems. She has no tolerance for emotional vampires.
Comment from Amy: She has a preschooler with special needs. She received an email last Mother’s Day from a man with autism, and he wished his mother had had a blog, so she didn’t have to do it all on her own. He was so grateful and supportive.
Question from Carmen: She has six kids, and two of them have autism. Her oldest, who is neurotypical, does not want to have kids because of his experience with his siblings. How can she bridge the gap with him?
Shark-Fu mentions that she doesn’t have children, and she doesn’t want biological children for a variety of reasons. Her mother crashed emotionally several times, and now her concept of being a mother has been skewed by that. That’s not everyone’s experience, of course, but she can understand it. It’s not really about the special needs, though, she says. It’s important to talk with your neurotypical kids openly and honestly about their siblings and the parenting experience. It helps to let them see the positive aspects of being the mom of a special needs child. Carol says to make sure that temperament and disability are completely separate things.
Shannon says to check out Wrong Planet.
This was such a great session, and I would like to thank all of the speakers on the panel.
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wow – great recap! I so wish I had been there. I write about my son Max (4yo) who was diagnosed almost 2 years ago with Autism. I blog the ups and the downs and if he gets to a point where he is pissed off at me for writing about him, well then that means I did my job! And I would absolutely encourage him to start a blog about his oversharing mom.
[…] We had to leave the Expo early, though to get to the Blogging Autism session. This was a last minute change for us after NHL’s behavioral diagnosis (which has since been changed… more on that in a later post.) It turned out to be a very informative session for us. During the session, I tried coming up with a few questions to ask, but never came up with anything good so I just sat, listened and tweeted highlights. Meanwhile, CutestKidEver live blogged the session. […]
Thanks so much for the fabulous recap! As a teacher (and friend of Stimey), I truly appreciate the details in the live blog of the session so the information can be shared with others who weren’t able to attend.